Points of Pride

Catherine Seo's Research is Creating a Model for Patients to Collaborate with Their Doctors

By Marianne McCarthy

Last month, Media Psychology student Catherine Seo debuted her documentary film, “The Disease They Call FAT,” at the 1st International Symposium on Lipedema in New York City. The film was part of a two-day event in which top medical researchers, surgeons, and other medical professionals from around the world gathered in support of finding a cure for the often misunderstood (and misdiagnosed) disease.

Lipedema is a fat disorder characterized by irregular fat distribution under the skin. Typically, fat is disproportionately located on the legs and hips. Painful and debilitating, it can result in immobility if left untreated. An estimated 17 million women in the United States are afflicted with Lipedema; 11% worldwide.

Driven to discover the root of her struggle with unexplainable weight gain and constant pain in her legs, Seo stumbled upon the Lipedema diagnosis in a book by Prof. Dr. Etelka Földi. When she shared her findings with her primary care doctor, who knew nothing about the disorder, he encouraged her to learn more.

“He told me I’d have to help him so he could help me,” said Seo. “I was going to learn what I needed to learn, and do whatever I had to do, in order to find out what was going on with my body, and so, that’s what I did.”

Armed with her Handycam and her research skills, she traveled around the world to interview patients and medical specialists. Her efforts culminated in the documentary film and also a website, Lipedema-Simplified.org, which is a compilation of her research and her personal experience with this disabling disease. She’s even hosted a series of online symposia with doctors that she’s met from around the world.

In a system that blames obesity on the individual, her goal has been, in part, to raise awareness so that those with Lipedema can stop blaming themselves. Through a partnership with Dr. Mark Smith, director of The Friedman Center for Lymphedema Research & Treatment at Mount Sinai Beth Israel, they created The Lipedema Project, which helps patients form collaborations with their doctors to learn more about their health and what treatment options exist.

“I’m hoping that my experiences provide a model for empowering people to take control of their own health in a way that they can get the kind of collaboration and partnership that they need with their health care providers,” said Seo.

She believes that people with any kind of disorder have a lot to contribute to the understanding of it.

“We have a very top-down autocratic health care system. The idea of a patient group being able to collaborate with professional health care clinicians and researchers is unheard of in the health care system,” she said.

During her research, Seo began to realize that the anti-fat bias is deep-rooting in the health care system.

“People are blamed by the media. They are blamed by their health care providers because there’s an underlying assumption that it’s controllability—that the reason that you’re overweight is because you eat too much. Well, it’s much more complex than that,” said Seo.

For her dissertation research (expected completion January 2016), she is exploring how deeply women's lives are impacted by cultural distortions of women and their bodies. She admits that she was also quick to blame herself at first, even though she was doing all the right things. Healthcare professionals either explicitly or implicitly reinforced her self-assessment.

As Seo finalizes her dissertation on media’s influence on women and the idealization of body image, she is exploring self-compassion meditation as an intervention because “so many of us try so hard to change ourselves to meet some external value structure.”

Her work won’t stop there though. She and Media Psychology Faculty Member Karen Dill-Shacklefordhave submitted a research grant proposal focused on improving body image dissatisfaction.

“Understanding the psychology of how media is projected, how it’s consumed, how it’s integrated into our culture, is the leading edge of what’s happening,” Seo said.